Thank You (Falettinme Be Mice Elf Agin)

I want to talk about some funk! My love of funk is deep, down to my soul. It just makes me happy, makes me bob my head and move to the rhythm, giving me a smile. The lyrics usually aren’t very deep, instead more silly and light-hearted in nature. The core of funk is the bass line and drums, highlighted by funky guitar riffs and complimentary horns. While there are plenty of funk bands these days, I mostly prefer the old school. I think of my “Mount Rushmore” of funk bands: James Brown and the JBs, George Clinton and Parliament Funkadelic, The Meters, and Sly and the Family Stone. Sly is who I want to focus on today. He was most prominent in the late 60s through the 70s, formed in San Francisco during the golden age of free love and hippies. Sly and the Family Stone brought funk to the masses there, bringing together people from different backgrounds. Their songs were soulful and happy, with great harmonies and horns on top of a funky rhythm. They cranked out plenty of hits, like Dance to the Music, Stand, Everyday People, Everybody is a Star, Family Affair, and the song I want to talk about today, Thank You (Falettinme Be Mice Elf Agin).

Now I know what you’re thinking: What the hell is Fallettinme Be Mice Elf Agin? Well, the song sounds more like ” Thank you, for letting me be myself, again!” With it’s driving baseline by Larry Graham, a funk pioneer in his own right who started the slap bass technique, the song instantly pulls you in. The accompanying guitar riff and horns all blend well together. That’s the secret to a great funk song; several small and non-complex melodies and rhythms melding together to create something great. Just like cooking, the end result is greater than the sum of its parts.

Thank You has great message, one that embraces individualism and differences between us all. What a crazy thought! In this world today that is filled with divisiveness and hate speech, we could all use some positivity. Messages of acceptance and unity, coming together as one rather than judgment and stereotypes that lead to a racist, sexist, and anti-Semitic country. Now, I don’t want politics to enter this blog, so I’ll just say this: no matter what affiliation you may have reading this, you have to admit that the current climate is not helpful. And both sides have to accept blame and come up with creative solutions for a better America. There!……off my soapbox!

When I’m funking out to this song, I think about the wonderful support system of family and friend that have helped me deal with CF throughout my life. Living with a constant sense of mortality and daily limitations can be daunting and depressing if you don’t have the right people near you. From my parents and family growing up, to the lifelong friends I made in high school, to my amazing wife and son today. Everyone has helped in ways they cannot imagine. Without them, I would have been lost many times over, and could have allowed CF to overwhelm me. With them, they allow me to live a more positive life, all while dealing with the constant curveballs that this illness presents. Through these positive influences, I can be me. And I Thank You (Falletinme Be Mice Elf Agin).

Happy Thanksgiving everyone!

Ripple

I chose this as the first, but not the last, Grateful Dead song to write about. It’s the gem of my all time favorite Dead album, American Beauty. This album was a change of pace from their previous efforts, going away from the psychedelic sound to a more acoustic and folk-centered theme. It is said that they were heavily influenced at the time by the Band’s Music From Big Pink, and wanted to create their own kind of American folk music. They accomplished just that, with American Beauty, filled with great harmonies and strong songwriting complimented by Jerry Garcia’s acoustic and steel pedal guitars. They even added in some mandolin, played by David Grisman, who would go on to be in a short-lived bluegrass band with Jerry called Old and in the Way. This album has always been a go-to of mine, one I have never tired of.

Ripple is the first track from the B side, for those of you who remember vinyl. The simple acoustic strum and baseline compliment each other well, with accompanying mandolin sprinkled in. Jerry’s vocals are a perfect fit for this sound, both simple in soothing. Although never a great singer, Jerry flourished on songs like these. He portrays Robert Hunter’s lyrics perfectly (they frequently wrote songs together), singing about walking life’s path.

There is a road, no simple highway 
Between the dawn and the dark of night 
And if you go no one may follow 
That path is for your steps alone

I think of these lyrics and how they relate to my life. Everyone has their difficulties and challenges through their lives, and I’m no different. A good portion of my challenges come from my daily battle with CF and chronic illness. There are plenty of obstacles constantly being thrown into your path, causing detours or delays towards your goals. “No simple highway” he sings, referring to the winding path of life that is anything but a straight line. And while CF can cause many detours and frustrations, one must still keep their goals in sight. It’s easy to lay down and forget these goals exist, or succumb to the illness; it can be exhausting to try to live a normal life with all of CF’s challenges. But if you can overcome, and still reach some or all of your goals, the success will feel that much sweeter because of the hard road you took to get there.

I feel like I have achieved a lot of my goals, both in career and in life. I am now married, a successful P.A., with a teenage stepson and a great life in Denver. However, it was difficult to get to this place, a lot of struggles and roadblocks along the way. And while I had a great support system growing up, I had to forge my own path in early adulthood and figure out how to balance life and CF alone. A big part of that was moving away from my family, forcing me to manage the illness and life on my own. There are a lot of intricate details that must be dealt with: medical bills, insurance woes, treatments and exacerbations, not to mention the daily hardships of symptoms. Through all that, I still worked and went to school for years, in the hope I would achieve the success I now have. And while that was extremely grueling and difficult, I felt that was the best way for me to evolve into a better person and a real adult. As the song goes “If you go no one may follow, that path is for your steps alone.”

I want to talk to the other people with CF who may be reading this blog: follow your dreams and achieve your goals. While there are constant day-to-day challenges with this illness, CF doesn’t have to define you and force your path. You can break through, however difficult it may be, to stay on your own road to success. And success can be defined in many ways; not just by big life items but also by the small stuff! So whether it is overcoming setbacks to finish school, finding a job or career you wanted, moving away to find yourself, or something else entirely. The important thing is to keep moving forward in life, not letting the incredible weight of this disease drag you down into the abyss and impede your personal progress. At least that’s what I think about it. And this song always helps me keep it in perspective. Preach on, Jerry!

Comfortably Numb

I. Love. Pink Floyd. I mean….who doesn’t? Their music has been transcendent through multiple generations. The mix of great lyrics accompanied by great instrumental work, augmented by what was at the time state of the art synthesizers and effects, could elevate you to a higher plain. It was, and is still, truly artistic.

I first discovered Pink Floyd in high school, and was hooked right away. I would listen to many of their albums in their entireties late at night or while going to sleep. Dark Side of the Moon, The Wall, Animals, Wish you Were Here, Meddle, and many more. Their albums were not really just a compilations of songs but rather an opus that flowed from beginning to end, each song falling into the next like it was meant to be. Their masterpiece, Dark Side of the Moon, is a great example. It was perfect, front to back. So much so that you could never imagine the songs in any other order. After Dark Side, The Wall was probably the pinnacle of their success. It became a movie and a concert experience, almost like a rock opera.

I want to talk about one song in particular off The Wall, Comfortably Numb. It is one of my favorites, and always puts me in the right mood no matter where I may hear it. Now, everyone thinks this song is about drug use. But it’s really about Roger Waters’ experience with anesthesia while he was sick on tour. While under heavy sedation, he related the feeling to a childhood ilness. Take a closer look at the lyrics below:

Hello,
Is there anybody in there?
Just nod if you can hear me
Is there anyone home?

Come on, now
I hear you’re feeling down
I can ease your pain
Get you on your feet again

Relax, I’ll need some information first
Just the basic facts
Can you show me where it hurts?

There is no pain you are receding
A distant ship’s smoke on the horizon
You are only coming through in waves
Your lips move, but I can’t hear what you’re saying

When I was a child I had a fever
My hands felt just like two balloons
Now I’ve got that feeling once again, I can’t explain
You would not understand, this is not how I am

I… Have become comfortably numb

There is a reason I am talking about this song. That’s because, as I write this, late at night, I am getting ready to fast for anesthesia tomorrow. In the morning, Mari and I will go to the hospital so I can have a port placed. For those of you who don’t know, a port is a semi-permanent catheter running to the tip of the heart. It has a hub underneath the skin on the R side of the chest. It will be extremely sore for a while, and I will have a constant reminder of it every time I look in the mirror.

Now this is a break from the normal routine, when I have had a PICC line placed in either arm. Even though that also goes to the tip of the heart, it can be removed after the antibiotics are finished. So when it is done I can forget, if only for a while, that I am constantly sick. Since I have had so many, however, my arms have a lot of scar tissue and my veins are thickened and narrowed. These factors make it more and more difficult to put in place. During my last hospitalization, they had so much trouble they needed to dilate my veins with a balloon to thread the catheter through. It was extremely painful, and I was awake the entire time. I listened to the doctor getting audibly frustrated, running out of options and calling in assistance from a colleague. All the while I was strapped to the table unable to move, trying not to freak out!

So subsequently I was told that a port was needed. And truthfully, I probably should have had one long ago. When the yearly exacerbations became more every like 6 months or even less, it was time. But I resisted, because the idea of a port signified a benchmark of progression that I was unwilling to accept. I guess I have to let that go; these things are out of my control. So I am sitting here writing, and trying not to let my anxiety get the best of me. I think back to the song.

O. K., just a little pin prick
There’ll be no more aaaaaaaah!
But you may feel a little sick

Can you stand up?
I do believe it’s working, good

Hopefully tomorrow all will go well, with no complications. Hopefully, this will be the last procedure I need for a while. Hopefully, the port will be an improvement for future exacerbations. Hopefully, during the procedure, I will become………..

Comfortably numb.

Many Rivers to Cross

This song is one of my all-time favorites, written and sung by Jimmy Cliff. Now, for those of you who know me well, you know that reggae is my jam. I can listen to it any day of the week and twice on Sunday. This song is from the soundtrack The Harder They Come, which is also an obscure movie from the 70s starring….you guessed it, Jimmy Cliff. Check this album out, it is outstanding. This particular song, Many Rivers to Cross has emotion and is filled with sadness and regret. His character is one of solitude who winds up alone and resorting to petty crimes to make ends meet. Jimmy’s voice is complimented tremendously by background singers who build the song to a great crescendo at the last chorus. These particular lyrics stand out to me:

Many rivers to cross
But I can’t seem to find my way over
Wandering I am lost
As I travel along the white cliffs of Dover
Many rivers to cross
And it’s only my will that keeps me alive
I’ve been licked, washed up for years
And I merely survive because of my pride
Now I know this sounds a little depressing and sad, as he is a low point and struggling to carry on. And this is true for myself as well. Early on in my young adult and adult life, I felt like I was wandering alone. Now I know what you’ll say: Chad, are you muthufuckin’ crazy? You had a tremendous family and a lot of friends who had your back! And while that was certainly true, and I am grateful for all the people in my life, I was still alone. Because no matter how well someone knew me, they didn’t know the illness. They can’t understand the day-to-day pain and struggle that this illness can cause. They weren’t able to realize the emotional uncertainty that comes with not knowing when the axe will fall, or if/when the illness would take hold. When the final moments would arrive.
I was always good at putting on a front and hiding the ugliness of daily life with CF. But there were many times when I would lay there struggling to breathe and wishing it would all be over. Or that I might have just a few days when I didn’t have this struggle or constant pain that followed me everywhere? Or not knowing when the progression would be too great to overcome, or an exacerbation would be too severe to fight off? There were many times I just wanted to give up and let CF have its way with me. But something kept me going; whether it was stubbornness, pride, the will to survive, or the guilt of letting my family (mostly my mother) down. I just can’t be sure. But there were dark times. And those demons still lurk their ugly head around sometimes.
OK, I know that’s pretty dark. And my family may not want to hear this stuff. Well, I need to get this stuff out. So if you can’t handle the raw and the bleak that comes with this then you probably shouldn’t be reading this blog! This needs to be a place where I express my emotions without judgement, both happy and sad, positive and negative. So DEAL WITH IT!
So when I hear this song, and I recommend you listen to it, I am mixed with emotions. I feel the wave of sadness that this song represents to me. Sometimes I well up, and I have to let it out rather than choke it down. Because I am in a different place now. I found myself, made my way through P.A. school, and have a great career. I met the most wonderful woman, and had an instant family with our son, Jackson. My life is full, and the future is bright.
But that doesn’t mean I don’t have my moments. If this illness teaches us anything is that nothing stays the same. You have to keep evolving and adjusting, and sometimes the badness may overcome. And that’s ok, to feel anger and sadness and just need to RAGE!! And afterward, you feel better and relieved. But just holding it inside is no good. It’ll keep building up to a volcano that explodes! And you might wind up doing or saying something you regret or can’t take back. So channel your frustration or anger or sadness into something creative. Paint, play an instrument…..or write a blog! But do something to deal with the hurt and sadness. Otherwise it’ll eat you up and spit you out.
Oh, and listen to reggae. If nothing else, it will usually brighten your spirits. 🙂

With a Little Help From My Friends

This is a great song, both in melody and lyrics. OK, granted, there are two versions. The original version, by the Beatles and sung by Ringo on Sgt. Peppers, is great. You gotta love Ringo, he’s just a kind man who seems to project peace and love for all. And Lennon/McCartney wrote a great song as these always did. But I’m not talking about that version. I’m of the belief that when Joe Cocker covered this tune and played it at Woodstock, it became his own. The arrangement is much different and highlights the raw emotion of his voice. He truly gives everything he has to this song, which is both remarkable and admirable. To see someone literally writhing to and fro with his stanzas is a sight to behold. It is one of the things I love about music, the way it both captures your emotions and allows for their release at the same time. And in that moment, you can feel the artist’s joy and pain, happiness and sadness, all at once.

When I hear Joe Cocker belting “With a little help from my friends,” I think about a particular time in my life. I remember vividly sitting around as a family and watching The Wonder Years, to which this was the theme song. I was probably 10 or so, and we had just moved to Chicago. Moving across the country meant trying to put down roots in all aspects of life. Home life, the neighborhood, school, temple, and of course, the new CF clinic. We had quite the transition when we started going to Children’s Memorial in Chicago. Their philosophies and treatments seemed both different and foreign. Whereas before, I was told to stick to a low fat and high calorie diet, which is really hard by the way, the new clinic wanted me to get as many calories as possible by any means necessary. They recognized that the better our BMI, the more likely we were to be able to ward off infections and exacerbation. There were new meds, new nebulizers, new ideas on how to battle this day to day. And my parents and I had to meet and become co-pilots of this world with a whole new CF team.

And along with that new team, of course, was a new hospital with new inpatient experiences. In New Jersey I only knew a couple of people that I knew with CF. None of them were my age, so we weren’t close. When I was admitted, I might be roomed with adults who have other illness. But at this new hospital Children’s, they made an effort to make children with CF feel as normal as possible. There was an entire floor that was mainly dedicated to CF children, and the nurses made sure that all the kids knew each other. Hell, they threw us in the playroom daily all together so that we would feel like a group. We would stay up late and talk about our lives, play games and sneak around the hospital. We got in trouble quite a few times. I remember one time this girl Jennifer Cherry and I broke into the morgue to check it out. I have know idea why; it was a bad idea and weirded me out to no end, but we did it anyway. There’s so much idle time while you are staying in the hospital that we would do anything to keep busy. But we would do it all as a group of friends.

The CF team even had an overnight camp every year! This was freaking amazing. I had never been to overnight camp because no camp could handle my needs, and as a result my brother never was able to go either. But we both went for a few years in a row, to a camp filled with CF kids and their siblings. Plenty of activities and bad food, late nights and shenanigans. I remember feeling not like an outcast, but just one of the crew. We all had T-shirts with our nicknames on them. There was group treatments morning and night, where all the cystics would do nebulizers and the camp counselors would perform postural drainage. All in the same room! The entire experience was a revelation, and something I always remembered. I kept some of these friends through life, and although sadly most of them have now passed they are still with me. Because I don’t feel alone with this illness.

Now, things are different. With more resistant bacteria, the camps were not allowed to stay open. CF patients were isolated to prevent spreading infection. Most of you may know what it looks like when I’m in the hospital nowadays. Every nurse, tech, RT, MD, or otherwise has to mask/gown/glove-up before entering my room, and any time I want to leave the room I must wear a mask. Patients aren’t encouraged to interact and if they do, must stand at least 6 feet away from each other. But it is frowned upon now, and the only social interaction is online and virtual. And while that is important, and I’ve met many people over the years, it’s not quite the same. Relationships can be fostered through social media but if that is the basis I don’t believe they are as meaningful. There is still something to be said for actual interaction and discussion, the occasional hug. Now I am all for taking precautions and making sure to limit spreading of deadly infections but I still break the rules. I like to see and hang out with a few of my CF friends, most of which I have made in the past several years. And I think that has to be something we do, even if it is considered taboo. People can still hang out, wearing masks and using hand sanitizer. Having friends who go through something you so, because it is so unique and relentless. Because it’s hard to stay positive and upbeat when something perpetually pushes you down. And relying on those closest to you, and those who have gone through it themselves, is critical.

As the song goes “Are you sad because you are on your own? No, I get by with a little help from my friends.” 🙂

Against The Wind

Bob Seger’s voice always gets me, resonating with soul and purpose. And I love this song. Even though it’s not about health struggles, I hear that song and it makes me think about the day to day struggle with CF. Since it is a progressive and chronic disease, things only seem to get tougher and tougher and the hardships more apparent as time goes by.

The main struggle for me is lung function. Two of the main components or benchmarks that CF teams go by is the FVC (Forced Vital Capacity) and the FEV1 (Forced Expiratory Volume in 1st second). Every time you go to clinic this is the first thing they do. And it can determine whether you get a relative clean bill of health for that day, or they decide to throw you in the hospital. It can be jarring too, because sometimes you feel pretty good and your numbers tell a different story. It can be pretty deflating. Now a normal person would have a FEV1 of 100%; most people don’t have obstructive pulmonary disease! So they might not know what we cystics go through. Imagine this: put a big spoonful of peanut butter in your mouth, attempt to take a deep breath, and blow out through a straw. Tough huh? Yeah it is, and it seems as time goes by my straw gets narrower and narrower.

I used to have a FEV1 of 50-60%, when I was a little younger and more of a spring chicken. Now on a good day I’m about 40%, and the bad days the percentage is markedly worse. No matter what I do, it seems I can’t fight the current and the progression. I have more difficulty with exercise and exertion, both in length of time and intensity. It feels like…….running against the wind. And not just a light breeze here. We’re talking 40 mph winds. Every step forward feels like you’re taking 2 steps back. It can be pretty deflating, and make you want to give up. But as Tom Petty says” You can stand me up at the gates of hell, but I won’t back down!” Sometimes that is easier said than done, but I try to keep that in mind when I don’t want to do my treatments or exercise. Even as my exercise routines are not as impressive anymore; I am pleased with a brisk walk these days!

But I can’t stand still, because that will only make the wind stronger, the quicksand deeper, the current more forceful. We all have our struggles that can make us feel like we are fighting against everything, against successes both big and small. These are some of mine. Like running against the wind.

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